Sorry I haven't updated what's been going on with my daughter especially since people here have been so helpful -
Briefly - March 15 my daughter had the initial FMT transplant through colonscopy. Prior to that she did the triple antibiotic therapy (Flagyl, Vancomycin, Rifampin). An interesting aside to this is that before doing the three antibiotics, my daughter did a few weeks of vancomycin alone and after a week, her stool was becoming partially formed. At this time she was on 30 mg of prednisone. She retained the transplant for less than an hour but her doctor thought that it was okay since at least all of the colon was exposed to the material. Her colonscopy also showed very little inflammation - probably due to the prednisone and possibly the vancomycin.
We followed up with 6 days straight of enemas. The longest she was able to retain an enema during this period was for about
5 hours. As we did more of them, she wasn't able to retain them for very long - sometimes 40 minutes, sometimes 2 hours. At this point she had tapered down her prednisone to 25 mg.
We then followed up with enemas twice a week. It varied how long she could retain them - sometimes overnight, sometimes less than an hour. She was tapering down her prednisone by 5 mg every week and her symptoms were better than they had ever been. However when she tapered down to 10 mg, her symptoms worsened with increased urgency and frequency and some blood in her stool. She had been taking Florastar but stopped a few days before. When she started taking it again, her symptoms improved. She started taking Lialda to see if that could bring her into a full remission and two days after she started it, she was really in a full remission, at least symptomatically - no urgency, no blood, 1- 2 solid BM's a day. She was on 5 mg of prednisone at that point.
She then developed a yeast infection and took fluconazole. After a couple of days she started to get symptomatic again. Since then it's been up and down for her - she hasn't gotten back to those 5 glorious days of full remission - but at least when she has a couple of rough days. she has been able to bounce back, unlike previously when she would have spiraled downward into a full fledged flare requiring more steroids . Right now on her good days, she is going 3 times a day - her BM's are pasty or semi formed. She is finally off prednisone and is taking Lialda, Florastar, VSL #3, turmeric, and fish oil. Diet wise she has tried to eat a high fiber diet while we are doing the FMT but it's a little challenging given that she goes away to school.
To complicate matters, she just left on a month long school trip to China - so no more FMT's until she gets back! She brought lots of VSL#3 and Florastar and the plan is if her symptoms worsen while she is there is to up the probiotics; if that doesn't help, take Vancomycin; if that doesn't help, back to the dreaded prednisone.
So that's been our story so far - I would say that FMT has definitely made the difference for her. In February we were thinking her summer was going to be spent getting surgery. Now instead she is going to China. Hopefully whatever benefits she got from FMT will last for her while she is there.
Post Edited (NowUCMe) : 5/31/2013 4:25:20 AM (GMT-6)